Thursday, February 4, 2016

Book Review: Why Can't I Get Better?, by Dr. Richard Horowitz

Before I get into the details of this book, I want to mention that this review is written from the perspective of an ME/CFS patient reading a book that is primarily about chronic Lyme disease. The book overall has excellent reviews on Amazon and it actually reached the New York Times Best Sellers list, which is remarkable for a specialty health book. Clearly, Dr. Horowitz did something right here.

I read this book for two reasons. I had recently received a questionable Lyme disease diagnosis, and I wanted to read a book about Lyme to see if it would help me decide whether I truly have Lyme or, if not, what else I could do to shed more light on this murky topic. The second reason was that ME/CFS and Lyme seem to have a large amount of overlap in symptoms, test abnormalities, and treatments. A Lyme book could be valuable reading for an ME/CFS patient.

At times I found this book to be a bona fide page turner; I was learning new things on nearly every page. Mind you, if you've been an ME/CFS patient for any period of time, you probably won't learn anything new on a "macro level"—that is, you won't discover any new concepts or treatments. But the book offers a deeper understanding of many of these old concepts, like mitochondrial dysfunction, the HPA axis, immune dysfunction and others. Dr. Horowitz views Lyme, ME/CFS, Fibromyalgia, autoimmune diseases, and other neuro-immune illnesses as being part of a spectrum he terms MSIDS (more on that later...), so it's relevant regardless of which neuro-immune disease one might have.

Usually when I read a health book, I'm constantly assessing how I might rate the book. For over 400 pages, I had this book pegged as a solid 4 stars, despite its flaws. Then on page 437 I came across this (in Chapter 19, called "Lyme and Exercise"):

"Patients with Lyme disease, fibromyalgia, and chronic fatigue syndrome (myalgic enchephalomyelitis) find their fatigue and pain syndromes improve with increased exercise, independently of other changes in their medical regimens."

Uh oh! It gets worse. Later, he says:

"Aerobic exercise has been shown to be effective in reducing fatigue among adults with chronic autoimmune conditions, as well as those with depression, cancer, multiple sclerosis, and chronic fatigue syndrome."

Later he recommends "a graded exercise program." In the span of two pages, the book went from a 4 to a 1 star. I was left wondering, how could someone who purports to be an expert on, among other things, ME/CFS be unaware of all of the studies showing that exercise makes ME/CFS patients worse—that it is, in fact, dangerous? The book has a copyright date of 2013; two years before the Institute of Medicine (IOM), in conjunction with the National Institute of Health issued its report which attempted to rename the disease SEID, or systemic exertion intolerance disease. One wonders if Dr. Horowitz took note of the IOM report when it was published and if future editions of the book might contain a revised Chapter 19.

But let's not allow the review of a 532 page book to be about 3 sentences. Although I probably risk being ostracized from the ME/CFS community for saying this, the rest of the book does have some value.

The Good. To build on something I said above, Horowitz does an excellent job of taking the reader on a wide ranging, comprehensive tour of the various systemic failures and corresponding treatment options for patients with chronic neuro-immune diseases. A brief scan of the chapter headings for chapters 5 through 18 gives an idea of the breadth of this book: Immune Dysfunction, Inflammation, Environmental Toxins, Functional Medicine and Nutritional Therapies, Mitochondrial Dysfunction, Hormones, the Brain, Sleep Disorders, Autonomic Nervous System Dysfunction/POTS, Allergies, Gastrointestinal Health, Liver Dysfunction, and Pain.

Despite having read extensively about most of these topics in the past, many of them were explained in a more clear, logical way than I'd previously encountered. For that reason alone, I'm glad I read the book and I'm glad I have it in my library as a reference source, despite the glaring flaw regarding the "e" word.

The Bad. Besides the exercise disaster mentioned above:

1) Dr. Horowitz tries to coin a new term: MSIDS, which stands for Multiple Systemic Infectious Disease Syndrome. This is meant to be a sort of overarching spectrum upon which the various neuro-immune diseases fall. The problem is, we don't need another acronym. This is obviously not a term that will catch on in the larger medical community. The goal of a book like this should be to make the subject less esoteric, not more.

2) Similar to the above, Dr. Horowitz proposes an MSIDS diagnostic algorithm amusingly called "The Horowitz Sixteen-Point Differential Diagnostic Map." Every time he refers to it throughout the book, which is often, he repeats the full 7-word eponymous title. I pictured the author in an infomercial, and whenever he says "...the Horowitz Sixteen-Point Differential Diagnostic Map" we hear the chime of a spoon against a crystal glass as a cartoonish gleam flashes on the doctor's smarmy grin. A voice-over adds "TM."

Things like this make me question an author's motive. Is he a true scientist at heart, nobly trying to expand the knowledge base and heal people in the process, or is he trying to become the next celebrity doctor, ala Dr. Oz? I don't want to be questioning this when I'm simply here to find some answers to my health problem. It makes me want to say: "It's not about you, doctor. It's about the patients."

3) Each chapter follows roughly the same format: There is an explanation of the scientific evidence regarding the topic of the chapter, be it Immune Dysfunction, Inflammation, etc., and a review of various treatment options. This is often done quite masterfully.

Then each chapter concludes with an anecdote or case study, lasting anywhere from 2 to 6 pages. These quickly become tedious and formulaic. A patient comes to Dr. Horowitz very sick and desperate. Dr. H applies The Horowitz Sixteen-Point Differential Diagnostic Map* (TM) and this results in him trying one or two treatments. The patient returns a few months later still feeling miserable. Dr. H digs deep inside himself and has a brainstorm. He adds another treatment. The patient returns a few months later smiling and singing. They hug. The end.

These anecdotes add very little except unnecessary length to an already long book. The book would have been better without them. They also serve as the vehicle for some eye-rollingly corny jokes.

4) Dr. Horowitz struggles with objectivity at times. He mentions that he has treated thousands of "MSIDS" patients but we are rarely let in on the big picture. What percentage are recovering fully? Are they staying recovered? Instead, the aforementioned anecdotes leave the reader with the impression that Dr. H is a kind of miracle healer. It makes one want to run out and immediately board a plane to New York to track him down. It is, of course, acceptable to use anecdotes to make a medical book more engaging, and naturally, the successes make for the best stories. But the author should take care to emphasize that the results in the anecdotes are not typical, and that many patients (presumably) remain ill despite using the very same treatments described in the anecdotes.

The same goes for Dr. H's coverage of controversial testing and treatment procedures. It is OK for the author to pick a side on these controversies, but he should first explain both sides and then explain why he picked his side. For instance, in the Allergies chapter, he discusses so-called IgG allergy testing and comes out heavily in favor of it. There is very little credible evidence that IgG allergy testing is valid, and in fact, the weight of the evidence seems to suggest it is probably not effective. At the very least, it is highly debatable. But you wouldn't know this by reading WCIGB.

Another example is Dr. H's reliance on controversial Lyme testing laboratories and other laboratories that test for metals and environmental toxins. They are all controversial in their own way. Dr. H should explain both sides of the controversy before choosing a side, so that patients can make their own informed decision.

Despite these flaws, I would have still rated this book fairly high if it wasn't for the melt-down in Chapter 19. As an ME/CFS patient, I can't in good conscience give it anything other than a 1 star (★)

4 comments:

We ME/CFS PTs should all email this fellow with accurate Information regarding the 2day CPET and how aerobic exercise can worsen our condition. You must have produced an audible gasp when coming upon 437! So disappointing......!

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DISCLAIMER: I am not a doctor and have no medical training. Nothing in this blog should be construed as medical advice. This blog simply recounts my personal experiences and, at times, summarizes research from other sources. I can't verify the accuracy of these other sources. Never rely on anything you read here in making your own medical decisions. Always consult a doctor.

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What is Myalgic Encephalomyelitis (ME)?

The clinical definition of ME is complicated, and the symptoms are many. It is a "multi-system disorder" that affects a person's immune system, hormones, nervous system, and energy (at the cellular level). I prefer to explain, simply, that it feels like I have the flu. Every single day. This is an oversimplification, but it's often the best way to explain it to a healthy person.

About Me

I came down with ME in June, 2011. I was diagnosed six months later. This blog tracks my progress; my successes and failures along the path to (hopefully) sustained remission.
I live with my wife and two young daughters in Southern California.